EULAR PRP NEWSLETTER 01 | 2020Dear Patient Research Partners, dear friends, 2020 is not going as we expected just few months ago, but despite many restrictions, the EULAR Patient Research Partners (PRP) network is active and involved in many projects. We are happy to present this newsletter in which you can find an invitation to the virtual EULAR 2020 E-Congress, links to interesting articles and short reports on the involvement of PRPs in various projects regarding the RMD community. Happy reading. Join the EULAR 2020 E-Congress EULAR Congress, which was planned to take place in Frankfurt, has been cancelled, but you are invited to join the E-Congress instead! For patients, the registration to the EULAR e-Congress is free of charge! Registration to the E-Congress is open until 31. August 2020. Have a look at the E-Congress programme. Here are few tips on what not to miss:
There will be live chats in the PARE E-booth during the Congress week (3 - 6 June). Join us! Study Group for Collaborative Research Join the virtual meeting of the Study Group for Collaborative Research on Wednesday, 17 June 2020, 14:00 – 15:00 CET. This year, we would like to explore your interest to present some innovative initiatives or best practices related to Education of PRPs. Please register for this meeting. After receiving your application, you will receive a confirmation email with the link to the meeting space and final program of the meeting. We plan to hold the second Study group virtual meeting in September/October 2020. For this autumn meeting, we would like to invite you to submit topics for discussion. The overarching topic will stay the same – Education of PRPs. Covid-19: get involved in a global patient experience survey Little information is available regarding how patients with rheumatic diseases are affected by COVID-19. COVID-19 Global Rheumatology Alliance, which includes a large group of academics, clinicians, and patients working together, is sponsoring a study to obtain insights about how best to prevent or treat COVID-19 in this potentially vulnerable population. The survey was developed by physicians, patients, and patient-support organizations to better understand the patient experience during this pandemic. Get involved into the patient experience survey of the Covid-19 Global Rheumatology Alliance. Patient involvement in external projectsFOREUMFOREUM Foundation for Research in Rheumatology is promoting health in individuals with rheumatic and musculoskeletal diseases (RMDs) through effective research. It seeks to raise funds from interested commercial and non-commercial donors that share FOREUM’s vision and goals: recognising that research and innovation in this field are crucial for improving both the prevention and the management of RMDs and, hence, the living, working and socio-economic conditions of the more than 120 million people in Europe variously afflicted by RMDs. FOREUM seeks to initiate research of the highest quality oriented towards a broad range of RMDs and periodically announces calls for applications. FOREUM considers it important to integrate patients and patient organisations as full partners and at all stages in the project design and development. Patients are members of FOREUM’s governing bodies, with one patient representative in the Executive Committee and two patient representatives in Scientific Committee. Since 2016, Codruta Zabalan (Romania) is the patient representative in the Scientific Committee. Two years ago, Heidi Bertheussen (Norway) joined the Committee to be the second patient research partner representing PARE. Codruta was so kind and answered a few questions for the PRP newsletter. WHAT IS YOUR JOB IN FOREUM? To review and score projects, and to represent patients in all FOREUM activities (face-to-face meetings, calls and on-line meetings, email discussions etc.). It is our task to see if the short-term and long-term potential benefits for patients are high, to assess if the burden for the patients involved as subjects is acceptable, and whether patient research partners are involved in a meaningful manner. Of course, the most important task is to not forget to be a patient and assess the applications from a patient’s point of view! WHY IS THE WORK OF FOREUM IMPORTANT? FOREUM’s work is equally and highly important for researchers and patients because, besides ensuring more funding for rheumatology research, one of FOREUM’s first commitment is to guarantee that patients are placed at the centre of the research process. This means that the patients’ benefits in treatment and quality of life are the main goals of the funded proposals. WHAT DO YOU LIKE ABOUT THE WORK YOU HAVE TO DO? There are many things I like about being a PRP in the FOREUM Scientific Committee, like being able to contribute to research by putting in practice the knowledge acquired during the meetings of the EULAR PRP network. I feel well taken care of and optimistic about influencing the future treatment achievements in RMDs (ensured by the high quality and novelty of the funded proposals) and I am being considered a valuable team member within the Committee. I expand my knowledge in the field by learning about state-of-the-art treatments in RMDs. And I could go on and on. But the most important thing for me is the faith RMD patients put in me by trusting me to do my best to represent the voice of every single patient in need, to make sure that the proposal is looking out for patients’ best interest. WHAT ARE THE BIGGEST CHALLENGES? I need to improve my lack of medical, research and statistical background so that “methodology” doesn’t seem such an unbeaten, hostile land. It is a bit difficult to assess feasibility without having the proper background. But the solution is, besides just asking the researchers, dedicating more time to searching appropriate websites on RMD research and attending the EULAR PRP network meetings, EULAR Congress and other educational offers. And in the not so far away future taking the PARE and PRP online course of the Eular School of Rheumatology. CAN YOU SEE ANY IMPACT OF WHAT YOU CONTRIBUTE TO THE WORK? More and more, PRPs are considered a powerful voice within the FOREUM Scientific Committee. Our recommendations are always conveyed to the applicants when asked to submit full applications. There is an increasing number of good lay summaries (submitted by the applicants) to enable PRPs to evaluate the research proposals and involving patients as partners in research projects is becoming regular practice. More principal investigators respond to EULAR’s & FOREUM’s recommendations and requirements to involve patients. PRPs are gradually more involved within all the phases of the research projects, being part of the advisory boards of the projects. DO YOU HAVE ANY SUGGESTION HOW THE WORK COULD BE IMPROVED? Including at least three patients in the Committee, taking into consideration the growing number of applications submitted with every call (the average number is between 50-60 applications per call) or having a pool of PRPs willing to help with the assessment during the FOREUM calls. Working together with a researcher (member of FOREUM Committee) as a consultant and being able to ask questions or request guidance would have been of great help for me. And of course, having a good evaluation form of the PRPs’ contribution to FOREUM. In my view, the most important benefits of good evaluation are having a strong, scientific evidence of PRPs’ work and enabling the future PRPs to learn from the mistakes and achievements of their predecessors. We are working on this. RT-Cure Rheuma Tolerance for Cure (RTCure) is a public-private partnership (between governments, universities and research institutes on the public side and industry partners on the private side) focusing on earlier detection and prevention of Rheumatoid Arthritis (RA). The aim is to change the treatment paradigm from late and unspecific to early and specific. The overarching aim of the project is to prevent RA or its progression by inhibiting the expansion of pathogenic autoimmune responses through immune tolerising treatments. If successful, the type of therapy that RTCure is aiming for may completely change today's management of RA worldwide, by inducing drug-free remission and ending the need for lifelong treatments in many patients. Currently there are nine PRPs involved in RTCure, both men and women of different ages and from five different countries. Margôt Bakkers, one of them, shares her experience: In 2017, EULAR sent out an invitation to take part in this translational initiative as PRP. With some hesitation I decided to offer my services. RTCure is divided into seven work packages. Each work package had a different topic and one or two PRPs assigned. My work package concerned data collection and analyses. I was assigned to it and let’s say that it wouldn’t have been my (first) choice. My main task was ‘taking part’ in the monthly calls. I only listened in to 6 of them and then decided that I needed help because I couldn’t understand one single thing that was discussed. The researchers talked on a different, more scientific level. So, all I could actually do was listen. I decided to share my complaint with the EULAR PRP coordinator. Soon it became clear that all PRPs had the same struggles. At the RTCure annual meeting it was decided to take the PRPs out of the work packages and continue as a separate group, providing support to all requests of researchers. Another challenge was the signing of a legal agreement which none of the PRPs understood and therefore wouldn’t sign. After 2 years of intense discussions, a simple non-disclosure agreement was settled upon. There were rewarding moments as well, the most rewarding was the first annual meeting in Beerse, Belgium. I met most of the other PRPs and Susanne Karlfeldt, who plays an important role in supporting the PRPs. I would have quit long ago if she hadn’t been there for us. We also had interesting talks with some researchers and other professionals, which fortunately led to a better understanding between PRPs and researchers. My advice for patient involvement in multi stakeholder projects is better communication and making clear what is expected from PRPs and talking in layman’s terms instead of a scientific language none of us understand. And a better understanding that we are RMD patients that have limitations in their physical capacities and limited understanding of scientific terms Research Priority Setting for Arthritis and Rheumatic Musculoskeletal Diseases in IrelandBy Stacey Grealis and Emma Dorris What is Research Priority SettingResearch priority setting is a collective activity for deciding which “unknowns” are most worth trying to solve through research. Unknowns may be problems to be understood, solutions to be developed or new approaches to be tested. Co-creation of research priority setting is aimed at reducing bias in the research agenda. Traditionally, the health research agenda has been largely researcher- and politics-driven with limited influence from other stakeholders such as people living with health conditions, caregivers or the community. This can lead to research gaps that fail to address important needs of these stakeholders. Our ApproachThe Patient Voice in Arthritis Research (PVAR) was launched by the UCD Centre for Arthritis Research in December 2017. From initiation, the scope, role and remit of the PVAR was co-created with people living with RMDs. The PVAR helps to promote open dialogue between everyone interested in improving the lives of those living with RMDs. The PVAR aims to involve people living with RMDs at every stage of the research cycle. This includes at the earliest stage: when priorities are set. Recently, the largest national RMD charity, Arthritis Ireland, outlined research prioritisation as a goal in their 2019-2023 strategic plan. We decided to work together. We decided early on that, while we would report back to Arthritis Ireland via the research working group, the design and analysis of the project would be run independently from them. A research priority setting team was formed from different parts of Ireland consisting of three academic researchers and three people living with RMD. The project was designed such that there are equal decision-making powers for all members of the project team. In reality, what does this look like?The first thing to note is that all members of the project team are working on this voluntarily. That includes both researchers and patient insight partners (PIPs). We are doing this because we believe it is important and to the benefit of people living with RMDs in Ireland. The small budget we have will cover supplies and travel costs for face-to-face meetings. Could we have waited until we had a larger budget and dedicated staff? Probably, but timing and environment are often critical to the success or failure of these initiatives. There is immense goodwill towards patient involvement and more collaborative approaches now. We felt it was important to capture this “mood” while we could. How were people living with RMDs involved?The 3 PIPs have equal responsibilities to the academic members. The project team was e-introduced to each other and each member highlighted what experience they were bringing to the project. Each PIP had equal decision-making capacity within the team. They were involved from the beginning in all stages, including project development, methods and survey and workshop review. These documents were reviewed during virtual 1.5-hour sessions. The first phase of the project was a face to face workshop with all stakeholders. This workshop allowed for more participation from the wider patient community with about 30 people taking part. The workshop was conducted and supportively lead by the PIPs which allowed for patients to feel comfortable and be able to speak freely. This workshop will help us to analyse the national survey to identify what research is needed. This national survey lent a Republic of Ireland voice to the project. This survey was again co-produced, reviewed and revised by the PIPs. This survey was distributed on a National level in May 2020 and the PIPs assisted in the circulation of the survey to the target stakeholder groups. PIPS were involved in the promotion of the survey at patient and public events by the charity partner (Arthritis Ireland) and to promote the importance of public and patient involvement in research in the national media. How is it progressing to date?We have received over 1750 research questions from more than 450 respondents, over 65% of whom were people living with an RMD. The next step is to systematically go through every question and group them, as people ask the same question in different ways. We will use the information from workshop 1 to help us do this. Then we will need to go through each of those grouped questions and see which have either (1) already been answered or (2) are currently being researched. We will have help for this section from people who are independent from the project (which should help reduce any biases). We will then have a multi-stakeholder workshop to reduce these down to the top 30-40 questions. There will be a second national survey to rank these questions in order of importance to gain our top 10 research priorities for RMD research in Ireland. picture: Prof. Gerry Wilson (Chair of Rheumatology, UCD Dublin) and Grainne O'Leary (Chief Executive, Arthritis Ireland) at the first workshop. Interesting to readRead Dawn Richards’ article for BMJ: Don’t call my experience a patient “story” Download a book about rare inflammatory diseases New lay summaries publishedRead three new lay summaries of EULAR Recommendations: 2019 EULAR recommendations for the role of nurses 2019 update of EULAR recommendations for Vaccination in Adult Patients with Autoimmune Inflammatory Rheumatics EULAR recommendations for the management of Sjögren’s syndrome with topical and systemic therapies Don’t forget to check the lay summaries of ARD articles for patients and non-clinicians to accompany selected key research papers published in the journal. These lay summaries are reviewed by members of EULAR PRP network, more than 150 lay summaries were reviewed and published. Many thanks to all PRPs who contributed their reviews! Volunteer surveyWithin the EULAR PARE Volunteers Framework project, we have developed a questionnaire to capture the data of volunteers who have already supported EULAR in various roles until now, or those who would be interested to step forward to join us at a certain point in time. It will help EULAR to understand what is important from the volunteers’ perspective and also enable us to ensure volunteer work can be matched to the individual much better than in the past and to ensure expectations can be better met. If you haven’t done so already, please fill in the survey. Thank you!Many thanks to all of you involved in research projects, lay summary reviews, registries, and much more! If you have any interesting information or news to share, please send it to Betka Göhmann, the EULAR PRP network coordinator. Stay safe and healthy! |